SamQKitty
01-07-2002, 11:50 PM
My cousin has been having some motor problems for about two years. He's had weakness and dragging of leg on one side, occasional tremors in hand (on same side), along with loss of memory and poor concentration. He's been to many doctors (among them 3 neurologists) who have given him as many different opinions or, in some cases, no opinion. One doctor thought he might have PD, and another doctor said he had Parkinson-like symptoms. One doctor wanted to do a PET scan to rule out PD, another said he should have a SPECT scan.
My question is this: Is there any definitive test for Parkinson's? What are your thoughts on PET vs. SPECT scan? Given his symptoms, what kind of neurologist should he be seeing (or other doctor)? And is there any other information about PD we should have, even though he doesn't have a definitive diagnosis?
Thanks in advance for your help!
My question is this: Is there any definitive test for Parkinson's? What are your thoughts on PET vs. SPECT scan? Given his symptoms, what kind of neurologist should he be seeing (or other doctor)? And is there any other information about PD we should have, even though he doesn't have a definitive diagnosis?
Thanks in advance for your help!
Sponsor
Pelicangirl
01-08-2002, 01:46 AM
Hi SamQ
Right now, the only definitive diagnosis for PD is an autopsy. No matter how bad we may feel, I don't think any of us would opt for that route.
Your cousin should see a Movement Disorder Specialist, a doctor who specializes............well, you get the picture. Seriously, they are trained to recognize PD and other diseases that cause unwanted movements and can usually recognize them before a regular neurologist can. That's not to say a regular neurologist may not be able to recognize Parkinson's, but as far as treating it, the the MDSs are much more able.
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Pelicangirl (aka Ruth)
Right now, the only definitive diagnosis for PD is an autopsy. No matter how bad we may feel, I don't think any of us would opt for that route.
Your cousin should see a Movement Disorder Specialist, a doctor who specializes............well, you get the picture. Seriously, they are trained to recognize PD and other diseases that cause unwanted movements and can usually recognize them before a regular neurologist can. That's not to say a regular neurologist may not be able to recognize Parkinson's, but as far as treating it, the the MDSs are much more able.
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Pelicangirl (aka Ruth)
SamQKitty
01-08-2002, 03:23 AM
What a coincidence, Pelican Girl...my real name is Ruth, too!
Thanks for response. Actually, my cousin has already seen a movement disorder specialist. He's seen so many neurologists that I can't remember which one told him what. Will check with him again and see what latest status is. Do you know anything about PET scans versus SPECT scans? One doctor said a PET would show PD, the other said a SPECT would be better. They're hard to schedule around here, so he wants to find out which might be more definitive before he goes through the hassle of getting it scheduled and okayed by his insurance company.
Thanks again for the response.
Thanks for response. Actually, my cousin has already seen a movement disorder specialist. He's seen so many neurologists that I can't remember which one told him what. Will check with him again and see what latest status is. Do you know anything about PET scans versus SPECT scans? One doctor said a PET would show PD, the other said a SPECT would be better. They're hard to schedule around here, so he wants to find out which might be more definitive before he goes through the hassle of getting it scheduled and okayed by his insurance company.
Thanks again for the response.
Pelicangirl
01-08-2002, 11:20 AM
Hi SamQ (Ruth)
I'm sorry, I don't know anything about PET scans or SPECT scans, except I do remember reading something about one of them showing possible PD. Anyone else out there able to help with this one?
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Pelicangirl (aka Ruth)
I'm sorry, I don't know anything about PET scans or SPECT scans, except I do remember reading something about one of them showing possible PD. Anyone else out there able to help with this one?
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Pelicangirl (aka Ruth)
Lory
01-08-2002, 12:39 PM
Originally posted by SamQKitty:
My cousin has been having some motor problems for about two years. He's had weakness and dragging of leg on one side, occasional tremors in hand (on same side), along with loss of memory and poor concentration. He's been to many doctors (among them 3 neurologists) who have given him as many different opinions or, in some cases, no opinion. One doctor thought he might have PD, and another doctor said he had Parkinson-like symptoms. One doctor wanted to do a PET scan to rule out PD, another said he should have a SPECT scan.
My question is this: Is there any definitive test for Parkinson's? What are your thoughts on PET vs. SPECT scan? Given his symptoms, what kind of neurologist should he be seeing (or other doctor)? And is there any other information about PD we should have, even though he doesn't have a definitive diagnosis?
Thanks in advance for your help!
Hi, SamQ-, well the only thing I find so far is PET is positron emission tomography, and SPECT is single positron emission computer tomography. But, you have my curiosity up, so will investigate further. Lory
My cousin has been having some motor problems for about two years. He's had weakness and dragging of leg on one side, occasional tremors in hand (on same side), along with loss of memory and poor concentration. He's been to many doctors (among them 3 neurologists) who have given him as many different opinions or, in some cases, no opinion. One doctor thought he might have PD, and another doctor said he had Parkinson-like symptoms. One doctor wanted to do a PET scan to rule out PD, another said he should have a SPECT scan.
My question is this: Is there any definitive test for Parkinson's? What are your thoughts on PET vs. SPECT scan? Given his symptoms, what kind of neurologist should he be seeing (or other doctor)? And is there any other information about PD we should have, even though he doesn't have a definitive diagnosis?
Thanks in advance for your help!
Hi, SamQ-, well the only thing I find so far is PET is positron emission tomography, and SPECT is single positron emission computer tomography. But, you have my curiosity up, so will investigate further. Lory
Googy
01-08-2002, 05:16 PM
This use to be the standard.If it was PD !!!!! Taking Sinemet should improve it.Did they put him on any meds.? NPF is a good resource.We arent allowed to put the website.Ask Dr.Lieberman.
Googy
Googy
md1817
01-09-2002, 08:48 PM
Generally, PET is superior to SPECT for Parkinson's disease, although neither is used on a routine basis to establish the diagnosis, and the accuracy of the results depends greatly on the experience of the facility doing the test. Most places are NOT very experienced in the use of PET or SPECT in patients with Parkinsonism. Universities are generally more reliable.
Bruce
01-09-2002, 11:02 PM
You didn't give the age of your cousin. If he is about 40 or youger, it is not uncommon to misdiagnose the patient. Like Ruth said, your best bet is an MDs. The diagnosis depends a lot on the experiece of the doctor observing all the symptoms and how the patient performs simple physical tests. Bruce
SamQKitty
01-09-2002, 11:18 PM
Thank you all for your responses. Googy, one doctor did tell him that he should take Sinemet and if the symptoms went away, then it was PD. Unfortunately, my cousin looked up Sinemet and got scared off by all the side effects.
MD1817...he called the hospital where they would do the PET scan, and spoke to the doctor there who would read it, who said he wasn't that familiar with what to look for re PD. I'm not sure whether the movement disorder specialist would get to see the actual scan, or just the report from the doctor who was going to read the scan. I will ask my cousin about that.
Bruce, he's 54 years old, and just started having these symptoms about 2 to 2 1/2 years ago. The symptoms come and go, but several people have noticed the leg dragging. Also, he's now starting to have problems with his voice (he's an amateur singer, but has dropped out of his vocal group because of his voice problems).
I will be talking with him about this in the next few weeks, and will ask him what the current status is, as far as what doctor he's seeing and what further tests he's going to pursue.
Thanks for your prompt responses. Will post again when I know more.
MD1817...he called the hospital where they would do the PET scan, and spoke to the doctor there who would read it, who said he wasn't that familiar with what to look for re PD. I'm not sure whether the movement disorder specialist would get to see the actual scan, or just the report from the doctor who was going to read the scan. I will ask my cousin about that.
Bruce, he's 54 years old, and just started having these symptoms about 2 to 2 1/2 years ago. The symptoms come and go, but several people have noticed the leg dragging. Also, he's now starting to have problems with his voice (he's an amateur singer, but has dropped out of his vocal group because of his voice problems).
I will be talking with him about this in the next few weeks, and will ask him what the current status is, as far as what doctor he's seeing and what further tests he's going to pursue.
Thanks for your prompt responses. Will post again when I know more.
Bruce
01-10-2002, 09:55 AM
Of course, we all react diferently to pd drugs, but most pd patients take Sinemet, with little problems. You can drive yourself crazy reading all of the side effects and it is unlikely he would experience all of the side effects.
All of the pd drugs have the potential to give you some nasty side effects, but the only way to know for sure is to try it. If the drug causes problems, it is very simple, you just stop taking it. I took one pill of Requip, and I knew right away that isn't the drug for me.
Bruce
All of the pd drugs have the potential to give you some nasty side effects, but the only way to know for sure is to try it. If the drug causes problems, it is very simple, you just stop taking it. I took one pill of Requip, and I knew right away that isn't the drug for me.
Bruce
Bruce
01-10-2002, 08:27 PM
I found it. 80% of parkinson patients take Sinemet
WebMD
Bruce
WebMD
Bruce
Googy
01-10-2002, 11:14 PM
Good research Bruce !
Googy
Googy
SamQKitty
01-11-2002, 12:18 AM
Thank you all for the responses. I'm passing this info on to my cousin, and will let you know what his status is as soon as I know myself.
You are all so kind to share your information and experiences with new patients!
You are all so kind to share your information and experiences with new patients!
redleg82nd
01-21-2002, 02:34 PM
Hi, Names Mike just need to no if anyone on this board was in the PGW[persion gulf war] and the reason I'am asking is I read an article in the VFW monthly mag that a test that has conducted in Texas that 20 to 80 thousand of us vets within the next 10 years may become diagnosed with PD or ALS. I have been diagnosed with PTSD,CFS/FMS and all symtoms of the gulf war. I've already got the numbness,pins and needles feeling in my arms and legs. Sometimes my wife finds me just starring at nothing. Somtimes I can't even get out of bed without help from my wife.
When I made an appt: with the VA to test my eyes because the sun would hurt really bad, but they would'nt give me pre sunglasses because I srevice connected yet. Kinda long quess I just wanted to talk to somebody. see ya later Mike.
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When I made an appt: with the VA to test my eyes because the sun would hurt really bad, but they would'nt give me pre sunglasses because I srevice connected yet. Kinda long quess I just wanted to talk to somebody. see ya later Mike.
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Googy
01-21-2002, 06:28 PM
Welcome Mike, Hope someone can come up with some facts.Did you see a MDS yet ? That would be your best help with info.
Googy
Googy
Pelicangirl
01-22-2002, 02:05 AM
Welcome Mike. I don't know about you contracting PD, but you certainly have a lot of other stuff going on. I was going to suggest that you join a Persian Gulf War group or something else, but I see you've already been there. We're a good bunch. If you want to talk and vent, this is a good place to do it.
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Pelicangirl (aka Ruth)
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Pelicangirl (aka Ruth)
SamQKitty
01-30-2002, 06:07 PM
Hi all,
I have one more question...is it likely to be PD if the symptoms come and go? Regarding my cousin, sometimes his symptoms go away completely for weeks, and even months at a time, but then they come back.
Ruth
I have one more question...is it likely to be PD if the symptoms come and go? Regarding my cousin, sometimes his symptoms go away completely for weeks, and even months at a time, but then they come back.
Ruth
Pelicangirl
01-31-2002, 02:06 AM
Hi Ruth (SamQ)
Well, it's natural for them to go away for short periods of time, like if you are under less stress at one time than another, but I don't really think they would go away for weeks or months at a time, unless he's in the very early stages of PD.
MD, any feelings on this?
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Pelicangirl (aka Ruth)
Well, it's natural for them to go away for short periods of time, like if you are under less stress at one time than another, but I don't really think they would go away for weeks or months at a time, unless he's in the very early stages of PD.
MD, any feelings on this?
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Pelicangirl (aka Ruth)
md1817
01-31-2002, 02:17 AM
I agree. Athough symptoms typically fluctuate, disappearing for months at at time would be unusual.